SPRING / SUMMER 2016 Volume 7 Issue 1
SHARING HOPE
The Faces Behind Organ Donation
5K
CELEBRATION OF LIFE
Get Ready for the Best Year Yet
A PUBLICATION OF
WHAT’S HAPPENING IN OUR LAB
An Exciting Future for Transplantation
JOE’S CORNER
OUR MISSION
NJ Sharing Network is committed to saving and enhancing lives through the miracle of organ and tissue donation and transplantation.
BOARD OF TRUSTEES Bruce I. Goldstein, Esq., Chair Howard A. Nelson, Vice Chair Michael P. Hedden, Treasurer Bonnie Evans, Secretary Edward J. Florio, Esq. Marc H. Lory Anthony L. Marchetta Vito Pulito, Past Chair Nancy E. Shafer-Winter, MSN, RN, NE-BC, CPHQ Antoinette Spevetz, MD Timothy J. Touhey Charles G. Walker ADVISORY BOARD Mark J. Zucker, MD, Chair Loretta Aigner, RN Gail Clegg Roseann DiBrienza, MS, RN Stuart R. Geffner, MD Michael Gould, MD Sarah E. Jensen, Esq. David A. Laskow, MD James Lim, MD Debra L. Morgan, MSW, LCSW Shamkant Mulgaonkar, MD Trish O’Keefe, PhD, RN John S. Radomski, MD, FACS Prakash Rao, PhD, MBA, FACHE, HCLD Bruce Stroever Harry Sun, MD Dorian J. Wilson, MD FOUNDATION BOARD Peter Rooney, Chair Marla Bace, Vice Chair Philip S. Kolm, Treasurer Randi Geffner, Secretary Cheryl H. Cohen, MBA, FHFMA Michele Dabal J.D. de León Lenore C. Ford Laura Coti Garrett, MS, RDN Honorable F. Michael Giles Derlys M. Gutierrez, Esq. Lisa J. Meyers Yvonne Payne Anthony E. Pizzutillo Suzann Rizzo Dan Sarnowski Bhavna Tailor EX-OFFICIO NJ SHARING NETWORK MEMBERS Joseph S. Roth, President and CEO Elisse E. Glennon, VP/Chief Administrative Officer, Executive Director, Foundation Barry Newman, Chief Financial Officer
Thanks to the tireless efforts of our staff, volunteers and supporters, I’m thrilled to report 2015 was a landmark year for organ and tissue donation and lives saved by transplantation in New Jersey. As we strive to ensure every opportunity for donation is fulfilled, we hit a new milestone. A total of 531 organs were transplanted (up 37%). We also had a 7% increase in tissue donation. This amounts to thousands of people having their health restored by the gift of life! New Jersey hospitals are the best when it comes to supporting organ and tissue donation. In 2015, 39 of our partner hospitals received Gold Awards from the U.S. Department of Health and Human Services Administration (HRSA) for their efforts—that’s more than any other organ procurement organization (OPO) in the country! Working at NJ Sharing Network is more than just a job. Just ask the six members of our dedicated team profiled in our cover story. They exemplify caring and compassion, and collectively have more than 75 years of experience in the organ and tissue donation field. I predict 2016 will be our best year yet. We’ll unveil our Landscape of Life Meditation Garden, expand our 5K Celebration of Life to a third location, and continue to break ground in our stateof-the-art Transplant Laboratory. Read Circle of Life from cover to cover for details. Our dedication to our mission—increasing the number of lives saved and enhanced through organ and tissue donation—has never been stronger…and we could not have done it without you.
Joseph S. Roth President and Chief Executive Officer
Interested in Saving Lives?
INSIDE THIS ISSUE
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WE’RE HIRING! Join Our Team
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Visit NJSharingNetwork.org/Careers
8 EDITORIAL TEAM Mara Barlow, Assistant Director, Marketing & Communications Jeanne Blanchard, Marketing Manager John Valentine and Alissa Treible, Marketing & Communications Coordinators Carolyn Welsh, Director, Organ Donation Services Alyssa D’Addio Bialko, Assistant Director, Philanthropy and Foundation Programs Marla Bace, Strategic Consultant Teresa Akersten, Writer/Editor Emily Fitterman, Graphic Designer Photography for Cover Story by Nick Benedetto of NB Productions Send comments to: editor@njsharingnetwork.org
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Sharing News Innovations in Transplantation What’s happening in our laboratory? I n the Community Life-saving lessons (and scholarships!) for high school students C over Story Meet the faces behind organ and tissue donation S ocial Media Our favorite posts about donation G enerosity at Work What your contributions make possible S ave the Date 5 K Celebration of Life Everything you need to know
SHARING NEWS
A Place to Remember and Reflect Landscape of Life Meditation Garden Opens Spring 2016
Breaking Ground with members of NJ Sharing Network’s Acknowledgement and Recognition Committee and community supporters.
A Winning Design NJ Sharing Network’s Landscape of Life Meditation Garden is being constructed by Landscape Techniques, Inc. of Nutley and was designed by Muzi Li, a Rutgers University student pursuing a master’s degree in landscape architecture. Li’s work beautifully captures the vision of staff, board members and volunteers. We are thrilled to announce her design received a student merit award for Landscape Architectural Design from the state chapter of the American Society of Landscape Architects.
Parade of Roses Five families with connections to NJ Sharing Network traveled to Pasadena, California to participate in the Rose Parade on New Year’s Day. The 2016 Donate Life Rose Parade Float, Treasure Life’s Journey, featured 60 floragraphs—portraits created from flowers, seeds and other organic materials—of organ and tissue donors, including Andrew Jova, Betsy Niles and Robert McCullion, representing New Jersey. Heart transplant recipient Mark Meade of Princeton Junction rode on the float, while living kidney donor Donna Albanese-DeMair of Scotch Plains walked alongside it. Since 2004, the Donate Life Rose Parade Float has served as a memorial to organ and tissue donors and a platform for donor families, living donors and transplant recipients to inspire the world to save and heal those in need through the gift of life. This was the 6th year the NJ Sharing Network Foundation sponsored participants in the famous kick-off to the Rose Bowl football game. Spring/Summer 2016
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NJ Sharing Network’s new Landscape of Life Meditation Garden, an outdoor sanctuary for those whose lives have been touched by donation, will be unveiled this spring. The 8,200-square-foot garden will serve as a peaceful place for visitors and NJ Sharing Network employees to reflect. The design includes quiet areas for individuals and groups to gather, the soothing sound of flowing water and various ways to honor the memory of loved ones and pay tribute to those who have generously supported the life-saving work of NJ Sharing Network. According to Judge F. Michael Giles, Chair of the Acknowledgement and Recognition Committee of the Foundation Board, “We hope that people visiting NJ Sharing Network and those who work there will take a few minutes to sit in the garden and think about the mission: To honor. To remember. To give hope.” The idea for a garden sprouted from NJ Sharing Network staff members and a portion of funding was raised through their Employee Giving Campaign. It is the latest way NJ Sharing Network offers to honor the legacy of those who gave the gift of life (see page 9). “Families touched by organ and tissue donation have supported our organization in so many ways. This meditation garden, and the sanctuary it will provide, is our way of thanking them,” said Elisse Glennon, the organization’s vice president and chief administrative officer. To learn more about dedication and recognition opportunities in the garden, please contact Alyssa D’Addio Bialko at 908-516-5432 or adaddio@ njsharingnetwork.org.
SHARING NEWS
Cover Story Update
Following Her Heart Whatever happened to the NJ woman who gave birth to twins after transplantation? After being told she would never survive a pregnancy, Stefania De Mayo became the first heart transplant recipient known to give birth to twins, a story we told in our inaugural issue of Circle of Life published in September 2010. Stefania has much to report since she appeared on our first cover holding her baby girls. The twins are now six-years-old and in kindergarten. They were joined by little brother Luciano in 2014. Last year, Stefania and her husband Richard celebrated their 10th wedding anniversary with a family trip to Aruba. “There’s a huge life after transplantation,” Stefania said. “There’s a bigger and better life.” Stefania remains close to the family of her heart donor Sean Clegg, his parents Gail and Andy and younger brother, Brian, her son Luciano’s godfather. On the girls’ bedroom dresser, a framed photograph of Sean serves as a reminder of the generous gift that saved their mother’s life and made theirs possible. In the years since her transplant, the 35-year-old Wayne resident has helped spread awareness about organ and tissue donation. She has spoken to groups of high school students and supported other organ recipients seeking to become pregnant. One woman who was apprehensive about transplantation told her, “You are my angel, because I didn’t want to do it.” What’s next? When the kids are grown, Stefania hopes to publish a book about her perspective on life. “No matter what, you have to follow your heart.”
A Lasting Bond The DeMayos and the Cleggs at Luciano’s christening.
Baby Makes Five The DeMayo twins, with their parents and brother, are now in kindergarten.
AN AWARD FOR
COMPASSION NJ Sharing Network’s Donor Family Council was recently presented with a prestigious national award from the Musculoskeletal Transplant Foundation (MTF). The 2015 Nicholas Miller Award for Excellence in supporting donor families recognizes organizations and people who make a difference in the lives of donor families. The Donor Family Council, pictured with our staff, was established in 2012. The council provides guidance to ensure an organ donor’s family is treated with the utmost care and compassion.
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SHARING NEWS
It All Starts With a Letter NJ Sharing Network’s Family Services Team is here to help donor families and transplant recipients who wish to connect with one another. Our staff facilitates confidential correspondence and guides individuals with the difficult emotions they wish to express. While letters may go unanswered, the act of writing is therapeutic and a positive step in the grieving process. Below, NJ Sharing Network Foundation Board Member Dan Sarnowski, the life partner of organ donor Betsy Niles, shares excerpts from his initial letter. January 23, 2014 It has taken me nearly three years to reach this milestone where I wanted to reach out to you…you are the recipient of one of Betsy’s kidneys and I hope you are in the best of health and that your life has been good since receiving your new kidney. My name is Dan and Betsy was, for ten years, my soul mate and the love of my life…As you can imagine, I am saddened and forever changed by the loss of my beloved Betsy. However, I am filled with great joy knowing that she was able to give you the gift of life…Betsy would rejoice knowing that she could assist your life. Please know that it has given our friends and family great consolation knowing that this caring and generous woman was able to help you in your need. With gratitude for taking time to read this letter, Dan
TO YOUR
Dan did not receive an immediate response, but he continued to write and express his gratitude. Nearly two years after the first letter, Betsy’s kidney recipient, Valentine, reached out and agreed to meet with Dan and Betsy’s daughter, Ali. Dan learned how, before his transplant, Valentine had been going to dialysis three days a week for more than 5 years. He had been considered for a number of other kidneys, but it wasn’t until April 1, 2011 that he was matched with Betsy and his major health problems were solved. “I’m so glad we did it. I thought it would be more difficult.” Dan said. “The meeting provided a very positive closure.” While meetings between donor families and transplant recipients are rare occurrences, NJ Sharing Network has many ways for donor families to interact and become involved with recipients. Some donor families will “adopt” recipients. To find out how you can become part of our vast and supportive donation community, visit www.NJSharingNetwork.org/ family-services.
HEALTH COPING WITH STRESS By Laura Coti Garrett, MS, RDN Many of us will experience stress at some point in our lives. The following tips can help you cope with stress, whether it’s brought on by health issues, the loss of a loved one or other major life changes. Stress is defined as a state of mental or emotional strain or tension resulting from demanding circumstances. To fight stress, start with identifying triggers and creating habits to eliminate or cope with these issues. The American Heart Association suggests: • D aily exercise, even a 10-minute brisk walk can be helpful • G ive up bad habits like smoking, drinking, too much caffeine, overeating • Get enough sleep • G et organized, plan ahead, make lists, declutter Breathing techniques are also helpful for stress management. Try taking a “me break” several times throughout the day. Close your eyes, breathe in through your nose, hold it and then slowly release the air through your mouth. Repeat 3 to 5 times. You can do this even when you do not think you are stressed. It is like taking a shower inside the body. You can also breathe deeply before encountering a situation you think may be stressful. When emotional problems become insurmountable and talking with family members or friends does not help, contact your physician to address chronic stress issues.
Laura Coti Garrett is the founder of Realtime Nutrition, Inc. and a member of the NJ Sharing Network Foundation Board of Trustees. Family Ties Donor families uniting with recipients, clockwise from top right: Ali Niles and Dan Sarnowski (center) and with his life partner Betsy Niles’ recipient, Valentine Samuels; Mitch and Ali Kogen (left) with their daughter Riley Kogen’s recipient, Omayra Candelaria; and Janice Campbell (left) with her daughter Jamila Irons-Johnson’s recipient, Janice McNamara. Spring/Summer 2016
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INNOVATIONS
Innovations in Transplantation What’s happening in our laboratory? could help facilitate anywhere from 9,000 to 35,000 more transplants a year. Another groundbreaking area of research focuses on predicting which transplant patients will thrive without a lifelong regimen of high doses of immuno-suppressant drugs. Not everyone needs to be on these drugs at levels that can compromise a patient’s immune system, explains Rao. Success in this area could save lives, improve quality of life and reduce healthcare costs.
I think we are on the threshold of some absolutely phenomenal things. Dr. Prakash Rao Transplant Laboratory Director and VP for Diagnostic and Research Operations A world in which nobody dies waiting for an organ transplant. It’s the goal that keeps NJ Sharing Network’s Transplant Laboratory Director and VP for Diagnostic and Research Operations, Dr. Prakash Rao, from getting much sleep. According to the United Network for Organ Sharing (UNOS), 22 people die each day while waiting for a transplant. But this number could be reduced to zero thanks in part to some exciting research findings coming out of NJ Sharing Network’s state-of-the-art laboratory. “I think we are on the threshold of some absolutely phenomenal things,” says Dr. Rao, who has been on the forefront of transplantation research for nearly 30 years. For one, new diagnostic measures are making transplantation possible for some of the sickest patients who in the past would have been considered ineligible for transplantation, or defined as difficult to match recipients. These advances
Last but not the least, Dr. Rao and his group are perfecting a technique where the power of genomics—the study of genes and their inter relationships—will be used to predict how kidneys will function following transplant. In combination with pathological studies of frozen sections of kidney biopsies, these studies should help in ensuring that all donated kidneys are optimally utilized, and exhibit good function post-transplant. Dr. Rao’s research findings are regularly presented at peer-reviewed scientific conferences.
Have You Heard?
Amazing Stories of Transplantation
YouTube: Patrick Hardison’s Face Transplant Journey
A complete face transplant performed on a firefighter who was severely burned while on duty was widely publicized in late 2015. The world marveled at the results of the complex operation which took 26 hours to perform at New York University’s Langone Medical Center and involved a team of more than 100 physicians, nurses, technical and support staff.
YouTube: Man Receives Double Arm Transplant— The Doctors A nine-hour experimental double arm transplant was performed at Brigham and Women’s Hospital in Boston in 2014 on a quadruple Spring/Summer 2016
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INNOVATIONS amputee who lost all his limbs after he contracted a streptococcal infection. According to reports, the professor and filmmaker took well to relearning simple tasks like writing, eating and brushing his teeth with his new hands. A double leg transplant could be in his future.
YouTube: 3D printing helps toddler receive adult kidney In January 2016, a toddler from Ireland reportedly became the first person in the world to receive an organ transplant with the help of 3D technology. The 2-year-old girl faced a lifetime of dialysis until a kidney donated by her father was successfully transplanted. Doctors used pioneering 3D printing technology to determine how to accomplish the groundbreaking operation. Reports said Lucy was running around within a week of the complex surgery and would soon be entering nursery school!
April is National Donate Life Month
Be the
Power of ONE
One sunflower seed has the potential to bloom, grow and create countless other seeds. So too does the gift of life through organ and tissue donation.
One organ donor has the power to save up to 8 lives. One tissue donor can restore health to over 50 others. Get Involved: • Register as a donor • Become a volunteer • S ign up for the 5K Celebration of Life April 24: Paramus, NJ | June 5: New Providence, NJ | August 21: Lincroft, NJ
SPREAD THE WORD IN YOUR COMMUNITY
YouTube: Heartbeat | Official Trailer Set your DVRs for a new medical drama about a brilliant surgeon premiering this spring. Heartbeat is based on the life of world-renowned heart-transplant surgeon Dr. Kathy Magliato and her high-pressure, high-stakes career described in her memoir, Heart Matters. The series stars Melissa George as the outspoken Dr. Alex Panttiere who is determined to push the envelope of medical science to new heights. Heartbeat airs Wednesdays at 8 pm EST on NBC.
Engage your community by bringing organ and tissue donation information to: Health Fairs • Local High Schools • Sports Leagues • Places of Worship • Town Events Become a certified NJ Sharing Network volunteer! Our monthly training sessions are held at our headquarters in New Providence, NJ.
To learn more, get involved and register as an organ and tissue donor TODAY, visit www.NJSharingNetwork.org.
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IN THE COMMUNITY
Life-Saving Lessons Powerful New Educational Tools for High Schools
NJ Sharing Network’s offices may be located in New Providence, but the bulk of our mission to raise awareness about organ and tissue donation happens outside our walls. Outreach efforts to educate students take us to high schools around the state. We’ve also reached thousands of young visitors to Liberty Science Center in Jersey City, where we recently unveiled a new
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Attention Class of 2016
The NJ Sharing Network Foundation is pleased to announce the availability of two scholarships for the 2016–2017 academic year, Missy’s Miracle Scholarship and the Betsy Niles Scholarship. Both scholarships are in the amount of $5,000 ($2,500 per semester) and are available to high school seniors who are awareness advocates or have been personally affected by or have a family member affected by organ and tissue donation and transplantation.
to
Applications must be received or postmarked by April 10, 2016. To download the application, visit www.NJSharingNetwork.org/ Scholarship.
Heart Recipient Emma Rothman exhibit. Plus, for the first time this year, we will award not just one but two scholarships to teenagers whose lives have been touched by donation. “You Have the Power to Save Lives” opens with teenager, Emma Rothman of Cranford, describing how she woke up in the hospital and was told by doctors she’d had a heart transplant. It’s one of many captivating moments in the new educational tools funded by Hearts for Emma, a Partner Fund of the NJ Sharing Network Foundation. The 8-minute video, which accompanies a brochure with the same theme, was introduced to NJ Sharing Network’s High School program earlier this year. It will be shown to thousands of high school students by volunteer presenters who travel throughout New Jersey. The goal of the presentation is to encourage teens to go home and use the companion brochure to start a conversation about donation. If you are interested in educational programs, speakers, or materials for your high school, or would like to join our volunteer educators, please contact education@njsharingnetwork.org.
Betsy Niles Scholarship The Betsy Niles scholarship is offered in memory of Betsy Niles, a children’s book editor and lifelong resident of Montclair. Betsy died in 2011 and, in keeping with her tradition of lifelong giving, her organs were donated. Betsy was known for always giving the perfect gift for every occasion. Betsy’s last gift was the greatest gift of all, the gift of life.
Missy’s Miracle Scholarship Missy’s Miracle, a program of the NJ Sharing Network Foundation, was created in celebration of the 30th Anniversary of Missy Rodriguez’s liver transplant. The program directly supports scholarships to high school students.
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A Reason to Revisit Liberty Science Center The newly updated interactive Organ and Tissue Donation Exhibit located on the first floor at Liberty Science Center in Jersey City gives visitors an overview of the life-saving benefits of donation. A new section of the exhibit features short videos which tell the stories of four New Jersey children whose lives were touched by donation: Nikhil Badlani, a tissue donor; Riley Kogen, an organ donor; Emma Navarro, a heart transplant recipient; and Devin McQueen, an intestinal transplant recipient. Visitors can also learn facts about organ and tissue donation through interactive activities such as the Organ Matching Challenge.
IN THE COMMUNITY
My Donation Connection
ou have the
JILLIAN PADILLA
Daughter of an organ donor, Clinical Administrative Assistant NJ Sharing Network
POWER
o save lives
#IGot
ThePower
You Have the Power to Save Lives, an educational video with accompanying brochure funded by Hearts for Emma, will start the donation conversation in schools across the state.
Must See! NJ Sharing Network’s latest exhibit at Liberty Science Center. Spring/Summer 2016
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On September 25, 2013, I lost my father Richard following a tragic accident. Nearly two years later, I came home to find a large package that had arrived by mail. It was Father’s Day, and a flood of emotions came over me when I pulled out a beautiful shawl created by NJ Sharing Network volunteers in honor of my dad, an organ donor with seven children. I felt like he gave it to me. That moment changed my life. My mother Haydee and I decided we wanted to stay connected with this caring organization. We became certified volunteers for NJ Sharing Network soon after. I started knitting again, watching YouTube videos to learn how to make shawls. Five months after graduating from William Paterson University with a degree in Women’s Studies, I joined the staff at NJ Sharing Network. Now I will be helping to expand the “Wrapped in Love” program, working with a group of volunteers who create remembrance shawls and blankets for donor family members. It’s sad that I lost my dad, but I feel happy that I have this connection every day to his gift of life. It’s comforting to know that at least something good came out of it. Being here is so rewarding. Do You Knit, Crochet or Quilt? Join us in helping make handmade shawls and blankets for donor families and quilting squares created in memory of those who gave the gift of life. If you are interested, contact Jillian Padilla at jpadilla@njsharingnetwork.org.
Sharing Hope The Faces Behind Organ Donation
The miracle of donation is spearheaded by compassionate and skilled professionals, such as the team pictured on our cover holding a photograph of organ donor, Dr. Randall Giles. “These staff members represent NJ Sharing Network’s clinical team, which works in collaboration with the hospital from the moment a call comes in with a referral for a potential organ donor and throughout the donation process,” says Carolyn Welsh, Director, Organ Donation Services. “Months and even years later, we continue to provide comfort and support to families like the Giles, while honoring the legacy of their loved ones.” Spring/Summer 2016
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COVER STORY
On these pages, get to know six employees, representing NJ Sharing Network’s clinical team, who gently guide families and support one another every step of the way through the donation process. They represent more than 75 years in the field and are part of the 150-strong organization devoted to our life-saving mission.
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ur Donation Resource Center works 24/7/365 to direct referrals for potential organ and tissue donors. Stephanie is part of a team that manages an average of 300 calls a day. She helps hospitals evaluate poten-
The most important thing is to connect with the family so they are comfortable.
It empowers me to be the beacon of hope for the families, to guide them in their darkest hours.
Wall of Remembrance
Honoring Their Legacy At NJ Sharing Network, we go to great lengths to honor the legacy of every donor. Their names, images and stories surround us and serve as reminders of the precious gift they gave…the gift of life. AT OUR PARTNER HOSPITALS • A moment of silence is held in the operating room before organs are recovered. •W e hold flag-raising ceremonies with a prayer, poem or moment of silence in honor of each donor. • D onor names or pictures are permanently displayed on memorial walls and gardens. AT OUR HEADQUARTERS • T he name of every donor is etched on our Wall of Remembrance, covering most of our building.
Stephanie Donation Resource Coordinator
tial donors and approaches families by phone about tissue donation. Her calls always start by offering condolences and families are never rushed to make a decision. “The most important thing is to connect with the family so they are comfortable,” says Stephanie, who has been with NJ SharSpring/Summer 2016
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• T he Landscape of Life tribute wall honors donors and recipients and acknowledges gifts received by the Foundation in their honor. • Q uilts of Love, each square dedicated to an organ and tissue donor, are displayed on our walls. Many are used in our communities to share our life-saving mission. •W e hold Remembrance Ceremonies to offer healing and hope to families. • C oming this spring: The Landscape of Life Meditation Garden will serve as a place for the donation community to pause and reflect (details on page 1). • P osters with quotes from donor families are hung throughout our corridors.
ing Network for 12 years. “We are specially trained to talk to grieving families, but it does comes naturally to me. I feel I have a gift to speak about donation.” How does she find comfort when dealing with grief on a daily basis? “Knowing that each donor is able to save multiple lives,” she says.
COVER STORY
remain viable. He also works to educate hospital staff about donation, follows-up on cases and provides emotional support to hospital and NJ Sharing Network staff. Oscar says he started as a recovery specialist and realized his calling once he began to have direct interaction with families. “I don’t consider this a job. I consider this a mission in life,” says Oscar, who has been with NJ Sharing Network for 24 years. “It empowers me to be the beacon of hope for the families, to guide them in their darkest hours.”
Rodger Transplant Coordinator
Joel Organ Recovery Specialist
n most cases, transplant coordinators approach families of potential donors. Rodger will share the patient’s donor designation or offer the opportunity for their loved one to be an organ donor. He stays with the donor during the organ recovery and works with transplant centers and surgeons to allocate the organs.
family services coordinator is often on hand to help support the family of an organ donor. Linda is available to answer questions and provide a shoulder on which to lean. She knows the important questions to ask donor family members: Who should be here to say goodbye? Would you like a spiritual adviser to come in? Have you eaten?
I
I know I could never bring your son back, but we could honor him on the memorial wall and everyone will know his legacy. Over the 7 years Rodger has worked as a transplant coordinator, he has approached dozens of families about donation. One particular day stands out. He recalls talking to a mother who was struggling with the decision to have her son be an organ donor. At this hospital, as with many across the state, a memorial wall honors those who gave the gift of life. “I know I could never bring your son back, but we could honor him on the memorial wall and everyone will know his legacy,” he recalls telling her. “I think what I said made a difference.”
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ospital service managers across New Jersey serve as liaisons between a group of hospitals and NJ Sharing Network. As the expert in the donation field, Oscar guides the hospital’s medical team through what needs to be accomplished, such as testing, blood work and making sure organs
A
Oscar Hospital Services Manager
O
ur organ recovery specialists play an important role in the operating room, assisting surgeons with the recovery of organs and making sure the donors are treated with respect and dignity. After the surgery, they are responsible for safely transporting the organs along with the surgeons from hospitals to transplant centers.
It’s a job where every minute counts and an error could mean a missed opportunity to save a life. In the 10 years Joel has been working for NJ Sharing Network, he has accompanied organs around the tri-state area and even outside the U.S. to Bermuda and Canada. “It’s a job where every minute counts and an error could mean a missed opportunity to save a life,” Joel says. “It makes me feel good to do this work. You don’t know if tomorrow you will need an organ or someone you love will need a transplant.” Spring/Summer 2016
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It feels like one of the most important jobs in the world. But her role doesn’t end once she leaves the hospital. Linda reaches out to families in the months after donation to provide support, invite them to remembrance ceremonies and update them about their loved one’s gifts. She also handles correspondence between donor families and organ recipients.
Linda Family Services Coordinator
COVER STORY
“It feels like one of the most important jobs in the world,” says Linda, a social worker who came to NJ Sharing Network after her father became a tissue donor. Linda says she will never forget the importance of having a member of the NJ Sharing Network team by her side when she lost her father. “It’s a very intimate time and it’s a privilege to care for these families.”
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he administrator on call works behindthe-scenes to make decisions during the entire donation process. Sharyn, Assistant Director of Organ Donation Services for NJ Sharing Network, must remain steady and
At the worst moment of their lives, it’s amazing how families can think of others. calm for the sake of her team. The goal is to provide the utmost care for each family. She makes sure all details are taken into account, from the language they are most comfortable with to their religious and cultural background. “I am constantly humbled when families say ‘yes’ to donation. At the worst moment of their lives, it’s amazing how families can think of others,” says Sharyn, who began working as a transplant coordinator 10 years ago. When she drives home at the end of a long day, Sharyn often thinks about the transplant recipients now in operating rooms getting another chance at life because of the care her team put into managing the donor. “There’s not a feeling like that in the world,” she says. n
Judge F. Michael Giles, father of organ donor Dr. Randall Giles
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n the cover of this issue, members of our clinical team hold a photograph of organ and tissue donor Dr. Randall Giles, representing all who have given the most generous gift…the gift of life.
His father, NJ Sharing Network Foundation Board Member Judge F. Michael Giles, is eternally grateful for the care and compassion he received from our staff during one of the most difficult times of his life.
As a doctor who practiced traumacritical care and general surgery, Randall knew first-hand the difference being an organ and tissue donor could make. Dr. Giles saved five lives and enhanced 50 others.
“I can’t say enough about these people. All of them…they are just wonderful,” said Judge Giles. “When I visit NJ Sharing Network, it’s all about love and support. You can touch it. It’s palpable.”
EXPRESSIONS OF GRATITUDE
“
My transplant coordinator was a ray of light during a completely dark time.
“ They are truly angels on earth and I love every one of them!
Thank you for being the inspiration and the example to follow.
”
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SOCIAL MEDIA
Connect With Us Whether you post, share, like, retweet, comment, or all of the above, thanks to social media, it’s easier than ever to spread the word about the gift of life. We encourage you to tell your friends and followers how much donation means to you. Remember to use #NJSharingNetwork, #DonateLifeNJ & #NJSN5K so we can continue to find your inspiring messages and photos! Here are just some recent posts weY !
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SOCIAL MEDIA
Going on a Trip? Spread the life-saving message of donation around the world by posing with a NJ Sharing Network banner and posting photos to social media. Banners can be requested by emailing John Keating at jkeating@njsharingnetwork.org.
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GENEROSITY AT WORK
IT TAKES A VILLAGE!
Thanks to past and present employees who made generous contributions in 2015! NJ Sharing Network employees help fund various projects throughout the year with our Employee Giving Campaign. Funds have been used to:
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Send a donor family to the
•
Sponsor a donor family to
Transplant Games of America
travel to Pasadena, California for the Rose Parade
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Purchase display cases for
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Build the Landscape of Life
our Quilts of Love
Meditation Garden (see page 1 for details)
Alida Sandoval
Placida Abes Amanda Abramo Maria Aguilucho Kathy Aitchison Joaquin Arisso Darryl Arnold Iraida Arvelo Mara Barlow Anthony Benfatto Alyssa D’Addio Bialko Kelly Bonventre Patricia Bowe Janet Brown Kasey Carr Sara Castellvi Sue Castellvi Frank Catena Trevor Cork Laura Creamer Rodger Davenport Dayanand Deo Adriana Diaz
Beata Spiewak and Felisa Shein
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Yessenia Escano Julie Everett Stephanie Flynn Jessica Francis Senora Fraser Elisse Glennon Paula Gutierrez Jan Hines Veronica Horvath Sogra Jafri Joyce Jardot Jorge Kalil Leena Kalola Monique Kaymore John Keating Tamara Kelley Donna King Helen LaCarrubba Eric Lanphear Tess Lewis Lillian Louglas Jackie Lue Raia
Romelle Lysenko Wanda Martinez Nancy Mata Mary Ellen McGlynn Rose Ann MelendezTavana Dennis Miguel George Moser Barry Newman Kim Olivencia Joel Padilla Benitez Jillian Padilla Tushar Patel Melissa Peck Christina Perez Sue Quiroga Prakash Rao Ratnaprabha Raval Eneida Rebyak Gina Restaino Joseph Roth Wendy Rothschild
Alida Sandoval Noria Santos Sharyn Sawczak Renee Schwartz Mike Sheehan Felisa Shein Patrick Sheridan Suki Singh Pamela Sniffen Alan Sori Beata Spiewak Alene Stewart Christine Tenore Eric Tuma Barbara Turci John Valentine Arnold Walden Colleen Walker Carolyn Welsh Linda Woznicki *Additional anonymous contributors
The Employee Giving Campaign is sponsoring Ezequiel and Iris Garcia to attend the Transplant Games of America this June to honor their son, Reinaldo, who was an organ donor in 2011. NJSharingNet work .org
GENEROSITY AT WORK
HELP GIVING SAVE
JOIN OUR
Ways to Contribute Online: Visit www.NJSharingNetwork.org/Contribute
CIRCLES LIVES
By Mail: NJ Sharing Network Foundation 691 Central Avenue New Providence, NJ 07974 For tribute gifts (in memory or in honor), please include the name of your tributee along with the name and address of those who should be notified of your gift.
Your generous contributions to our Foundation help us fulfill our mission to increase the number of lives saved and enhanced through organ and tissue donation and transplantation.
The Landscape of Life was created as a special place to honor organ and tissue donors, transplant recipients, and members of the community, and also acknowledge contributions made in their honor.
With our new Giving Circles, our supporters have the ability to build an even stronger connection with our mission. Funds raised by the NJ Sharing Network Foundation support:
• Clinical Advancement and Research • Supporting Families • Public Education • Scholarships • Awareness and Outreach
Landscape of Life
THE GIVING CIRCLES CUMULATIVE ANNUAL GIVING Chairman’s Circle Ambassador $5,000+ Benefactor $2,500 to $4,999 Patron $1,000 to $2,499
Blue and Green Circle Supporters Friends Contributors
$500 to $999 $250 to $499 Up to $249
Coming Soon!
THANK YOU to all of our contributors. You are truly SAVING MORE LIVES! Spring/Summer 2016
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A special recognition wall will acknowledge contributions made by individuals and corporations in our Giving Circles. We will also acknowledge 5K team captains, corporate sponsors, community partners and other supporters! To learn more about our Foundation and the Giving Circles, please contact Alyssa D’Addio Bialko at 908-516-5432 or adaddio@njsharingnetwork.org.
NJSharingNet work .org
SAVE THE DATE
A P RIL is Nati
2016
onal Donate Lif
e Month Engage your com munity by bringin go and tissue donat ion information to rgan your faith communitie s, schools, busine ss events health fairs and o ther events. Visit www.NJSharingN etwork.org/DLM to find all of the resourc es you will need or email us at info@njsha ringnetwork.org .
Saving and enhancing lives through organ and tissue donation is year-round work here at NJ Sharing Network. Whether you are looking to become a certified volunteer, spread the word about the power of organ and tissue donation or help raise funds, there are many ways for you to get involved.
APRIL th 15
SEPTEMBER th 30
NATIONAL BLUE & GREEN DAY
2016 SYMPOSIUM ON ORGAN & TISSUE DONATION
Show your support by wearing the colors of donation. Enter our contest by submitting your best photos!
Hilton Short Hills | Short Hills, NJ
Multi-disciplinary symposium will empower you to...gain knowledge, share experiences, meet members of the transplant community and learn about innovative and best practices.
Email Alissa Treible at atreible@njsharingnetwork.org or post to our Facebook page.
Contact: jblanchard@njsharingnetwork.org.
MAY th 17
OCTOBER th 17
18 FOR 8: TEAM LIBERTY 3rd ANNUAL GOLF OUTING
18th ANNUAL GOLF CLASSIC NEW LOCATION!
Ballyowen Golf Course | Hamburg, NJ
Metedeconk National Golf Club | Jackson, NJ
Play 18 holes (1 organ donor can save 8 lives) with this group of athletes who support organ donation. Team Liberty is a program of NJ Sharing Network.
Support donation with a round of golf as well as brunch, cocktails, raffles, an award reception and prizes. Visit www.NJSharingNetwork.org/golf.
Visit www.GoTeamLiberty.org to register.
Join Our Volunteers!
AUGUST st 1– th 7
We simply couldn’t do it without you. New volunteer certification trainings are held one Tuesday a month from 5–7 pm at NJ Sharing Network’s Headquarters. Upcoming dates: May 10, June 21, July 26 and September 20. Contact Veronica Horvath at 908-516-5637 or vhorvath@njsharingnetwork.org.
NATIONAL MINORITY DONOR AWARENESS WEEK
Celebrate diversity and underscore the critical need for people from all cultures to register as donors. Visit www.NJSharingNetwork.org/nmdaw.
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NJSharingNet work .org
ANNUAL
TO HONOR. TO REMEMBER. TO GIVE HOPE.
SAVE THE DATES / 2016 April 24th
Celebration of Life NJ Sharing Network’s Annual 5K Celebration of Life gathers thousands of participants representing donor families, recipients, living donors, those waiting, families who have lost loved ones while waiting, volunteers, community groups and business and hospital partners. We come together to honor those who gave, pay tribute to those who received, offer hope to those who continue to wait and remember the lives lost while waiting‌for the gift of life. Since the inaugural event in 2011, the NJ Sharing Network Foundation has raised more than $3.5 million toward increasing the number of lives saved through education, research, donor family support and public awareness about the lifesaving benefits of organ and tissue donation and transplantation.
Whether you participate in the 5K or the many other event festivities, join us for a fun-filled celebration including music, snacks, prizes and exciting activities for all ages. Together we can reach our fundraising goal of $1.25 Million! Questions? We are here to help! Email 5k@njsharingnetwork.org or call 908-514-1761. Sign up at www.NJSharingNetwork.org/5K.
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NJSharingNet work .org
PARAMUS
June 5th NEW PROVIDENCE
August 21st LINCROFT
5K Walk/Run at Bergen Community College 5K Walk & USATF Certified Race at NJ Sharing Network Headquarters 5K Walk/Run at Brookdale Community College
Thank you to our 2016 5K Celebration of Life Presenting Sponsors!
NONPROFIT ORG U.S. Postage
PAID Union, NJ
691 Central Avenue New Providence, NJ 07974 1-800-742-7365 • 908-516-5400 www.NJSharingNetwork.org
Permit No. 931
NJ Sharing Network is a member of Community Health Charities
WHO WE ARE NJ Sharing Network is a non-profit, federally designated organ procurement organization responsible for the recovery of organs and tissue for the nearly 5,000 New Jersey residents currently awaiting transplantation, and is part of the national recovery system, which is in place for the more than 120,000 people on waiting lists. NJ Sharing Network is a designated OPO by UNOS; accredited by AOPO, ASHI, AATB and CAP; and registered with the FDA and NJ State DOH. If you no longer wish to receive information from NJ Sharing Network, please call 908.516.5400.
Love a Challenge?
Volunteer Dan Weiniger is one of nearly 5,000 NJ residents waiting for a life-saving transplant.
How many people can you register as organ and tissue donors? With Donate Life America’s national, mobile-friendly registry, you can invite your contacts to register and track how many in your circle of family and friends sign up.
3 EASY
STEPS:
1
Visit www.NJSharingNetwork.org and click the blue “Register” icon.
2
After you register, create a profile and set up a personal challenge.
3
Invite your contacts and watch the registry grow!
Just 60 seconds can help save a life. Join the National Registry today.
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